How Can We Keep Our Ventilated Mom in ICU if the Doctors Insist on Sending Her Out to LTAC?

Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!

This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question from our readers and the question was

How Can My Mom Avoid Aspiration Pneumonia in ICU?

You can check out last week’s question by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients, Lloyd, as part of my 1:1 consulting and advocacy service! Lloyd’s mom is in ICU and he is asking how they can keep his mom in ICU if the doctors insist on sending her out to LTAC.

How Can We Keep Our Ventilated Mom in ICU if the Doctors Insist on Sending Her Out to LTAC?

“You can also check out previous 1:1 consulting and advocacy sessions with me and Lloyd here.”

Belle: Oh, well, it says, “The cardio mediastinal silhouette is stable. No significant interval change, in mild bibasilar opacities, atelectasis versus pneumonia. Probable small left pleural effusion. No discernible pneumothorax.”

Patrik: Okay. Yep.

Belle: I can send it. I can email it to you.

Patrik: I don’t know whether you can see what I just sent there? If you can email it to that email address, [email protected].

Belle: Okay.

Patrik: If you can email it to [email protected].

Lloyd: Okay. I just emailed you.

Patrik: Right. Okay, great.

Lloyd: Yeah, you have it.

Paul: Okay. That’s good.

Patrik: Thank you. Okay, well that’s pretty good. There’s no obvious indication for aspiration. So, what’s the…

Lloyd: The problem is the PEG (Percutaneous Endoscopic Gastrostomy). When we were talking to him-

Patrik: Oh, yeah.

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Lloyd: So, we told him we wanted to keep the nasal tube, and he said like, pretty much absolutely not. That’s not happening.

Patrik: That’s your choice. Not his choice.

Lloyd: Yeah. And he said, because I was asking him, he goes, and I pulled it out of him, because he initially was trying to, he at first was saying they have to be done together, but then he acknowledged that there are two separate teams that need to do it. And then he said sometimes they would do the PEG first. And it depends on, I guess the availability about on the teams. Or they could do the trach first.

Patrik: Yeah.

Lloyd: And then he, yeah, go ahead. Sorry.

Patrik: Don’t worry about the PEG. They’re just trying to intimidate you. They’re just trying to assert themselves. You have absolutely no obligation whatsoever to give consent to a surgical procedure. I would-

Lloyd: They have to ask for a signature, right?

Patrik: 100%. Look, with everything that’s happened with two failed extubations, I do believe your mom needs a tracheostomy. I would give consent to that. Other than that, they’re just trying to intimidate you. You have no obligation to give consent to a surgical procedure whatsoever. I wouldn’t even overexplain myself. Don’t get sucked into their reality. This is your reality, not their reality. It’s like a doctor telling you, “Oh, you have to have surgery tomorrow. Sign here.” Well, you do or you don’t. I mean, that’s up to you.

Lloyd: Yeah. Okay.

Patrik: So, I don’t know whether you’ve seen, yeah, go on.

Lloyd: I was going to say, there’s no risk of them kind of retaliating and saying, look, if you don’t agree to this, we’re not doing the trach. And I was saying… They said this is not high priority. So, it’s not like an emergency. They just have to. It could be in the next couple of days. It depends on how, even though she’s been on the vent for the last two weeks, for 14 days effective today, they said it’s not an urgent thing where they would put a trach on her.

Patrik: Look, it’s not super urgent. Definitely not. I would say within the next few days. As far as the PEG tube is concerned. I’m telling you; you should not worry about retaliation. I’m telling you, once your mom leaves ICU and goes to an LTAC (long-term acute care), you will regret the minute she walks, she enters at LTAC. It’s a nursing home.

Lloyd: Okay.

Patrik: Right?

Lloyd: Yeah.

Patrik: And they know that by you not giving consent to a PEG tube, you hold all the cards. They know she can’t go anywhere. That’s why they’re so pushy. The PEG tube is not for clinical reasons, it’s for reasons to stay in control of their bed flow because they can send your mom out once she has a PEG. That’s why he’s making such a big fuss. I can 150% assure you, I’ve looked after patients in ICU for six months and longer with the nasogastric tube. There’s no issue. The only issue with the nasogastric tube is if someone starts pulling it out, that’s when you have an issue. But if your mom is not pulling out the nasogastric tube, there’s absolutely no issue whatsoever.

Lloyd: Okay. Well, she can’t really use her hands, so.

Patrik: Well, right.

Lloyd: I don’t think there’s a big chance of that.

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Patrik: Right. Well, right. And hopefully she can use her hands, of course at some point, and it would be a good sign to a degree if she pulled it out. But if she pulled it out, there’s probably also a higher chance of her being able to eat and all of that. In terms of-

Lloyd: Sorry.

Patrik: Please.

RT Anna: Blood sample.

Lloyd: Oh, blood sample. Are you doing the arterial gas?

Lloyd: Arterial blood gases. Blood gases?

RT Anna: Arterial?

Lloyd: Yeah. Are they doing the arterial blood gasses?

RT Anna: Yes.

Lloyd: Yeah. Oh, they did that?

RT Anna: No, I’m doing it.

Lloyd: Oh, you’re doing it. Oh, okay. You’re doing it now. Okay. Thank you.

Patrik: Right.

Lloyd: So yeah. Well, I guess we can see what that is, but would that have an effect on anything at this point?

Patrik: Would that happen-

Lloyd: At this point?

Patrik: You mean with the nasogastric tube?

Lloyd: No, if the arterial-

Patrik: Look, I was much more curious about an arterial blood gas right after extubation.

Lloyd: Yeah.

Patrik: Now it’s probably less, it’s still important, but it’s probably now that she’s back on a ventilator, I would think that her arterial blood gas would be pretty good.

Lloyd: Okay.

Patrik: It’s more, it would be way more curious about what it was right after extubation because that’s when you should do one to see, whether after extubation, whether the arterial blood gas would be the same then while she was ventilated. Because that’s the aim basically from an arterial blood gas, you get oxygen levels in the arteries and carbon dioxide levels in the arteries, and that’s your ultimate determinant, whether ventilation is effective or not. But just quickly coming back to your point about retaliation, you should never fear retaliation. This is about your mom, and you’ve already stood up. I’m telling you, the minute she leaves ICU and goes to an LTAC, she’ll be in no man’s land.

Lloyd: Yeah.

Patrik: The number of clients coming to us saying, oh, I’ll just read your information. My loved one is in LTAC. If I had only known that LTAC’s are so bad… Just have a look online. Have a look at reviews of LTACs.

Lloyd: Yeah. I’ve looked at some of them.

Patrik: Right.

Lloyd: I’ve looked at some of the ones that they suggested. Some of them are just crappy, they don’t pay attention. Some of them have good physiotherapy, but horrible care. So yeah, that’s what we’re trying to avoid. So, if they come back and they say, we’re not, they can’t say we’re not going to do it if you don’t approve. We’re not going to do the treatment if you don’t approve.

Patrik: No. I’ve never seen that. No. That would be, I believe that would be medical negligence.

Lloyd: Okay. So, do you have any recommendation? She doesn’t have a primary or anything or a stroke doctor.

Patrik: Oh.

Lloyd: And I don’t know how he would go about finding a good one.

Patrik: So, are you saying that in all this time now, no neurologist has seen her?

Lloyd: Well, except for the residents and the attending here.

Patrik: I see. You would think that a hospital like this would have a proper neurologist.

Lloyd: I mean, she has the person who did the stent, but we’ve only spoken to him once since then, once or twice. But he hadn’t even seen her since the stent.

Patrik: Right.

Lloyd: So, he was just going to call him tomorrow and ask him if he had a recommendation. But he hasn’t been that responsive.

Patrik: That’s interesting. I would’ve thought that it’s been two weeks now, roughly?

Lloyd: Yep. They said that there was a stroke doctor initially that was part of his team, but that person never reached out to us, never called us, and we didn’t get her name. We didn’t, nothing. So, I guess we need to find a primary stroke doctor that would oversee all this, the whole progress, the therapist.

Belle: We’ve also reached the patient advocate. The patient advocate should be able to help. We just don’t know what the ask for. He’s reached out to the patient advocate in the hospital. We just want to make-

Lloyd: Yeah, they said to talk to the attending.

Patrik: Right. Okay.

Lloyd: They said to talk to the attending. It’s like they have one philosophy, and it’s like if they have conflict of interest or-

Patrik: Of course.

Lloyd: …they’re chummy, they’re not going to watch our interests.

Patrik: Yeah. I see. I think it’s imperative that your mom has a neurologist. I’ll tell you why. So now that we know a trach is on the horizon, the next biggest question for your mom will be what’s next?

Lloyd: Exactly.

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Patrik: And the only people that I believe can channel her rehabilitation in the right direction are the specialists, and the specialist for a stroke is a neurologist. So, from that aspect, I think it’s imperative that you get someone on your team that can channel her rehabilitation in the right direction.

Lloyd: Sorry, any idea how we would go about getting one?

Patrik: First, we probably should ask them to begin with. And if you think they’re not trying to help you, then you might have to look outside of the four walls of the hospital. You have to find a good one.

Lloyd: Yeah.

Patrik: I tell you what the challenge is with stroke patients with a tracheostomy, there are plenty of good neurology rehabilitation centers that can focus on stroke recovery. The challenge is that not many of them are equipped to look after tracheostomy and stroke recovery. And a good neurologist would know and would help you to select the right facilities when the time is right.

Lloyd: Okay.

Patrik: Because let’s just say your mom was not having a tracheostomy and would only be “dealing with hemiplegia”, it would be so much easier to get her into rehab. But now the tracheostomy to a degree will make it more difficult for her to find the right place.

Lloyd: Yeah. Okay. So that’s-

Belle: The fact she’s not going to be on a ventilator. The ventilator being out of the equation is going to help. Right? Does that open up new doors or is that…?

Patrik: Look, it-

Belle: She wouldn’t be going anywhere if she settled later?

Patrik: Not necessarily. There are places that do neurological rehabilitation with ventilation and tracheostomy. That’s not to say there aren’t others around the country, but they are a bit harder to find.

Lloyd: And there’s no directory, right? There’s no like central directory, that kind of delineates?

Patrik: Not that I’m aware of. But there might well be, I know those places to simply by talking to people every day. I pick it up sort of in conversation, but I’m not aware of a directory.

Lloyd: Okay.

Belle: And does the patient live there? This is called rehab, but it’s actually, it’s like a care facility. It’s not acute care. That’s bad. This is good rehab. I’m confused about the terminology. And what is she getting? Is she living there?

Patrik: I think if she went to an LTAC, for example, an LTAC generally speaking is focused on ventilation and tracheostomy and the respiratory side of things. Whereas a neurology rehabilitation should be focused on the neurology side of things. But it’ll be very hard, or it’s harder to focus on neurology rehabilitation or stroke rehabilitation if you’re still on a ventilator, if that makes sense.

Belle: Correct. No, definitely. We hope she’s off vent.

Lloyd: Yeah.

Patrik: Exactly.

Lloyd: They’re saying that they’re pretty sure she’s not going to need the vent.

Patrik: Yeah.

Lloyd: Because she has the… And they said that they would discharge her. And if this is any indication within a few days or a week, up to a week.

Patrik: Right. I’m just-

Lloyd: So that’s I guess an indication.

Patrik: Yeah, definitely. Look, I think I agree with you that with two failed extubations and having been fairly close to almost succeeding with extubation, I agree that she probably won’t be on the ventilator for long. And then the next step is to remove the trach.

Lloyd: So, I guess we also have to do the research about neurology rehabilitation.

Patrik: I think so. But I would also think that once they’ve done the trach, I would hope they want to work with you to get her out into the right place. But by you giving consent to a PEG, they will push her out without choosing the right place. They just want to get her out. And maybe just-

Belle: The patient.

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Patrik: Go on.

Belle: That’s what I’m confused about is the fact that we don’t have the PEG. That gives her… Why does that make a difference if we’re going to send her to stroke rehab? Is she going there and going back to the ICU or once she’s in stroke rehab, she’s out of the ICU?

Patrik: She’s out of the ICU. She’s out of the ICU.

Belle: Even without the PEG. Okay.

Patrik: Yes. I-

The 1:1 consulting session will continue in next week’s episode.

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